A Woman's Journey With Rare Disease

Outgrowing Resources

This weighs fresh on my mind today. I just received my testing schedule for my lung transplant evaluation on August 17-21. One of my friends received a transplant at UPENN a few years back (I referred her over to my doctor, after problems she faced at another center). I went to visit her at the Gift of Life Family House & was really impressed with their programs & accommodations. Little did I know then, that I’d have to utilize these services. But what if I didn’t have this resource?

In fact, I’m blessed to be under UPENN’s care for a variety of reasons. Not just their strong transplant program with innovative technologies for transplant but their wealth of resources for patients. I would actually have two facilities to choose from for my evaluation lodgings. One was Gift of Life Family House, but also right on campus of the hospital is the Clive F. Barker Transplant House.

Considering my evaluation testing runs Monday-Thursday, that’s at least 3-4 nights I’d have to spend there unless my friend & I want to drive back & forth each day, which would be doable but a traffic & scheduling nightmare. The fees for these resources average less than $70 a night, much cheaper than hotel accommodations, probably what we pay nightly we might spend in gas in at least 2 days shuttling back & forth. There’s parking with shuttles available to the hospital from the Gift of Life Family House (where I set up arrangements to stay), plus volunteers often come in & cook meals as well & they have many resources for both caregivers & transplant patients at all stages of the process. (In fact, they can accommodate the patient plus 3 other people at a time for the same rate & same room if it’s necessary. If one can’t pay, they aren’t turned away).

I may very well utilize the Clive F. Barker Transplant House in the future, it’s always good to have a back-up & I’m so happy I have any options (much less a choice of them) when it comes to this.

But I can’t help but think…what if I didn’t have these resources? What would an adult like me & a caregiver do? I don’t mean to open a can of worms, but there are resources for families of children like the Ronald McDonald house. Or even Hope Lodge for cancer patients. (Both are great resources, I don’t deny that.) But what if one has outgrown those resources or doesn’t qualify to use them?

I am used to outgrowing resources. For years while I was in the volunteer trenches with the TS Alliance, there were many misconceptions in the public spheres that TSC is a pediatric disease, which is incorrect. It’s a genetic disorder. It’s with someone for life & they don’t outgrow it. People may notice children more because they start having seizures as babies or are diagnosed as children. Eventually, though, those children grow up. Then where are their services once they turn 18 or 21? What if I was someone who wasn’t as independent as I am? How would I advocate for myself? What resources would be available to my family or friends or support team? In some cases, not many.

I obviously am not the only one to have these thoughts. Even though this article is Canadian, it speaks to this issue that is universal & global. It’s a real reality for some. Especially those who have transplant centers far away from where they live. Relocation is expensive & sometimes not realistic.

Luckily, there are some short-term solutions like organizations like Angel Flight that will defray or even take away the cost of travel. Greyhound offers bus programs as well. But once you get there, figuring out accommodations can be a real nightmare. AAA discounts only get one so far, and some hotels do offer hospital rates but they are still really expensive. It’s not like anyone can afford that rate for weeks or even months if needed.

Fortunately, the National Kidney Foundation (NKF) has a nationwide listing of transplant centers with housing accommodations. The sad news is, the list is very short & not every center has accommodations. What if my center didn’t have accommodations & there were no family or friends to stay with? I’d be in a bit of a bind.

But problem-solver I am, I would try a few more approaches. In those cases, I’d check with insurance companies. Sometimes depending on the phase there might be housing/lodging reimbursement or travel reimbursement available. It might not defray the entire cost out front but some may be able to be offset.

Or one could check with the transplant center & see if they have a program like Hosts for Hospitals, which people volunteer to open up their homes temporarily for patients. The hospital itself may also have housing they use for medical students or residents that they might open up or temporary apartments for rent that might be an option.

In 2004-2007 I had a lot of interventions & surgeries due to problems from LAM & TSC. I was being treated at NYU Langone Medical Center. They were one such place that did have temporary lodging available which was great for my parents since they were traveling from far away when I was hospitalized & it was definitely cheaper than trying to find a hotel close.

While I was at the National Institutes of Health (NIH) (who actually did diagnose me with LAM as part of their screening protocols), their on campus family house was full, but my parents were able to find lodging close the one time they accompanied me to a visit. It was a reduced rate, but luckily I wasn’t there more than 2 days or so.

But the fact remains, that nationwide, we need more resources like this for people & while they are important for children, they are of equal importance for adults.